Nicholas' Fight:

Unfortunately his symptoms continued to get worse and Mommy made the courageous decision to take him to the St Christopher's emergency room for answers. Nicholas was beginning to lose strength on the whole left side of his body, he was not able to walk even with assistance, he would fall when he was crawling and he was only able to sleep for 15-20 minutes. He started being very vocal when he was in pain by saying "owe" and was also unable to sit on a couch without support. All Christine wanted were some answers, and finally after 14 months of pain and worrying they were finally getting the answers they deserve. Nicholas was taken back almost right away to get checked out and then was sent to the orthopedic section of the hospital to get a consult. Christine talked with the orthopedic specialist and he advised she get another X-Ray at there facilities. When the results returned, it was instructed we meet with the neurosurgeon instead, that children his age can not get scoliosis unless its the result of something else going on. Almost another day later, the neurosurgeon checked out his MRI. Mommy got the news every parent dreads, they found what they believed was a mass. When the neurosurgeon took a better look at the MRI, he offered the possiblity of either a mass or fluid filled cyst located inside of his spinal cord, leaning towards a fluid filled cyst. With a cyst, the surgery only requires 2 small incision to drain the cyst and possibly 2 hours in the OR plus recovery time.

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Either possiblity requires surgery, which was scheduled for Tuesday November 6th.  About 1 hour into surgery one of the doctors came out to inform us that they indeed found a mass and that his back had to be cut from the tip of his spinal cord to the middle of his shoulder blades. We had many questions concerning the size and location of mass. Surgery was supposed to be 2 hours and ended up being 8 hours. He was stable through the surgery, with his vitals staying normal through out. Waiting was the hardest part. Around 7, Christine got a call from the OR that they were beginning to close him up and at 8 the neurosurgeon came over to deliver the results of the surgery.  What they believed was a cyst inside his spinal cord, ended up being a large mass. He had to cut the spinal column to reach the spinal cord. Once that was open the surgeon then cut the spinal cord in 1/2 enabling him to get the tumor out. The tumor was then measured 10cm long, the surgeon stated he had never seen a tumor inside a spinal cord so large. Because of where the tumor is located the surgeon could not get too close or he would have risked leaving Nicholas paralyzed. Although biopsy reports have not come back yet, they are confident it is non cancerous. In most cases tumors inside of the spinal cord have no cancer cells, although it is not ruled out, very few cases show that cancer is present. Many questions were answered by understanding the position and progress of this order. Because it was mostly on the left side, his left side was weakest; any bodily functions from the height of the tumor down were affected-bowel and bladder function, poor appetite, pain and weakness.  The scoliosis was caused from the size of the tumor; as the tumor continued to grow, it began pushing on the spinal column causing it to curve in multiple directions. There is a huge possibility that the cells left inside the spinal cord could begin to regenerate causing Nicholas to go through another life threatening surgery, with close monitoring for the rest of his life, they hope to catch it before it ever gets to this point again. They suspect this tumor could have started growing in utero, making it a very slow growing tumor.
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Nicholas and Mommy have a long road of recovery ahead of them. He will have to have an MRI every 2 months to monitor the growth of the cells still inside the spinal cord and as the doctors feel comfortable with the growth of the tumor they will push it to every 6 months and eventually once a year.  Nicholas will be followed by the neurosurgeon, urologist, orthopedic surgeon, urologist, nutritionist, oncologist, neurologist, gastroendnologist for the entirety of his life.  As Nicholas is beginning to recover, physical therapy has give him the ability to make huge strides in his progress.  Although he is still delayed, Nicholas is resilient and is more than eager to learn the things he should have been doing since a year old. 5 days after Nicholas was discharged from Shriner's Childrens Hospital in Philadelphia, they had to return to get fitted for his brace.  Nicholas has a 56 degree scoliosis and has to wear this brace for 23 1/2 hours out of the day.  He has been a complete trooper. Because the tumor was inside of the spinal cord, Mommy & Nicholas will not fully know the extent of the damage caused until it is fully healed which takes around 6 months.
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The best medicine for Nicholas is having Mommy there with him through months of recovering and years of continued therapy. Although it is going to be difficult Christine is determined to give her son the most normal and functional life he can live. With Nicholas being more susceptible to spinal cord injuries he will never be able to play like normal kids and will never be able to play contact sports. As you can see Mommy and Nicholas have gone through a lot so far as mother and son, but this diagnosis and surgery being the hardest they have had to go through. This diagnosis is not over now, this is a reoccurring issue for Nicholas growing up and has the potential of putting him back into the hopital for spinal cord surgery. Christine is a hard working, independent, single mother. She has devoted her whole life to helping people in need and now it's our time to return the favor to her. Christine's 20 month old son, Nicholas Stickel, is the light in her life. It hasn't been an easy road for Christine as she has faced many obstacles in her life & her life in motherhood, but she has been able to see herself and now her son, out of the dark. She always aims to look at the glass half full instead of half empty. No matter what life has brought her way, she succeeds in undeniable ways and continues to grow stronger. Her love, hard work, determination and dedication to family, friends and complete strangers on the street, has made a lasting impression on all the people fortunate enough to have met this beautiful young woman. Nicholas and Christine's family and friends want to begin this fundraiser to raise money for his present and future care. Through this extremely difficult time, we are looking at the positives in this unfourtante situation-Nicholas survived the surgery, he is moving his legs, he is talking, he is reaching for his Mommy, he is drinking and he is eager to be up and about. His amazing team of surgeon and staff have and will be there for them with resilience, strength and humor which they have always demonstrated to us. Please help in anyway you can so Christine & Nicholas can continue a seamless recovery and have a brighter future. Thank you so much for your time in reading their story and from the bottom of Christine and Nicholas' hearts and their close family and friends, thank you for all the prayers and well wishes as they go through, what seems like impossible times. Let us carry them through these difficult times; as they would never think twice to do the same for each and every one of us. In advance, thank you for you donation, no matter how big or small, anything will help this family in need.
 

​January 26th, 2013 UPDATE: For all that are not aware, Nicholas was admitted back into St. Christopher's Children's Hospital on Thursday January 24th. On the night of the 23rd Nicholas was beginning to lose his balance and by the morning lost all ability to walk or bear any weight on his legs. Christine called the neurosurgeon and he told her to get to the hospital immediately.  Within 10 sec of them evaluating Nicholas he was admitted into the Special Care Unit.  On Friday, they got the results of his MRI and we're informaed that his tumor began growing back.  On January 31st Nicholas will undergo a second more aggressive spinal cord surgery. Because his spinal cord is stilll not completly headled from his surgery from Novemeber, there are many more risks involved and a longer recovery time and will then undergo chemotherapy and inpatient rehab.

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​January 31st, 2013 UPDATE: Nicholas under went his 2nd spinal cord surgery. It was anticipated to be a 4-5 hour surgery and after 3 hours Christine received the call that Nicholas was done surgery and that they were going to begin closing him up.  Mom was really excited that his surgery was shorter then expected but then began having second thoughts. About an hour later the surgeon walked into the room with Nicholas' social worker and asked Christine to walk into the hallway to talk. He told Christine that the tumor had indeed grown back and more then he had anticipated from the MRI.  It began growing back in smaller clusters up and down his spinal cord, even above where it had grown previously. The neurosurgeon does not feel comfortable operating on Nicholas again and is praying that the chemotherapy is effective. The oncologist will see Nicholas on the 13th to inform Christine of side effects and insert a port which will administer the drugs during chemotherapy.  He will receive chemotherapy every week for at least the next year. Although it is not cancerous, because of how rapidly it is growing they need to try and eliminate these cells as soon as possible.  The upgraded his tumor from stage 1 to a stage 1 1/2 = 2, which means it is a more aggressive type.  There are only 8 cases in the entirety of the United States like Nicholas' which makes the treatment more questionable. They are going to treat the tumor with the type of chemotherapy they use on the children that suffer from ganglioglioma in the brain and the oncologist gave it a 50% chance of being effective. He will continue receiving MRI's every 3 months to monitor the growth and pray that he next MRI will come back with no new growth.  Please keep Nicholas in your prayers and we will keep you updated whenever new information arises.

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​February 13th, 2013 UPDATE: Nicholas, Christine and I went to the neurosurgeon to get his bandage removed on monday February 11th. The surgeon was impressed with his neurological functions and the way his incision is healing.  The surgeon has been trying to be Nicholas' friend for a while now and I think Nicholas finally has accepted his offer ;-) He informed us that Nicholas' biopsy report from his first surgery was back from John Hopkin's with their second opinion. It came back that it was in fact an intramedullary Glioma tumor.  But instead of it being a Gangliaglioma, it is a Pliomyxoid Astrocytoma, grade II. He was unable to disclose any information on this prognosis but Nicholas would be seeing the oncologist on Wednesday the 13th to receive his plan of chemotherapy so questions could be asked then.  While Christine and I were doing some research we were finding little to no information on his new diagnosis. What we did find is that it is a very aggressive tumor that has a higher chance of growing back even after an effective round of chemotherapy.  The tumor is still benign (YAY!) and only has a 2% chance of turning in to a malignant tumor later on.  Although the tumor is benign, his type of tumor is so rare that there are only 6 case studies on record, so there is not much knowledge as far as future surgeries, treatment, etc. At the oncology appointment Christine received Nicholas' plan of treatment. He will get an MRI this Wednesday February 20th on his entire spinal cord and brain so they have a base line of the tumor. On Wednesday February 27th he will be admitted into St. Christopher's for a general surgery to put in the port which will be used to administer the chemotherapy. That day/evening when Nicholas has recovered from surgery, he will receive his first round of chemotherapy. He will continue getting treatment once a week for the next 10 weeks. At that point they will give him a two week break so they can evaluate his progress/non-progress and receive another MRI. They will compare the two and decide if the chemotherapy is being effective like they need it to be. If all goes well, Nicholas will continue receiving once a week chemotherapy for 6 weeks at a time, with 1 or 2 weeks in between for the next year. If they are not happy with the results after the 10 weeks then they will sit down and change their course of treatment for Nicholas. Please continue praying for Nicholas and Christine for a healthy and seamless year as they go through chemotherapy, physical therapy and endless doctor's appointments. Although the beef and beer is over, it is important for each and every one of us to remind them when they are feeling down that they have a huge team behind them; fighting as long as they need us to. 



​February 20th, 2013 UPDATE: Nicholas went down to St. Christopther's today to get an MRI of his entire spinal cord and brain. They need a baseline of where the tumor is at right now before chemotherapy, so in 3 months when he finishes his induction phase of therapy they can compare the two MRI's and decide how effective the medicine/doses are working for him. We got to the hospital around 7am and he was supposed to begin his MRI by 8. There were some complications with the script the oncologist was supposed to send down to radiology in order to receive the MRI. It took until about 8 for the fax of the prescription to come over.  He was then moved over to radiology where they have trouble getting his IV in his arm. His veins are large but they kept going through his veins so they moved over to his right arm and were able to get a vein right away. About a 1/2 hour into sedation Christine received a call that the sedation was not working and that they had to put him under local anesthesia so he would not move through out his MRI. It actually ended up starting around 11am and we were able to go see him in recovery around 2:45pm. The surgeon and oncologist will look over the MRI tonight and are hoping that there is no news. No news is good news, right?!